Advocacy in Action w/ Helen Bundy Medsger

Dementia in an umbrella condition defined by a change in brain function that affects daily activities. Dementia can be caused by a number of underlying pathologies, but despite extensive advances being made in diagnosis and understanding of some forms of dementia, such as Alzheimer’s Disease, those navigating other forms of dementia are still frequently met with a very different experience, one of misdiagnosis and lack of support.  Lewy Body Dementia is the second most common form of progressive dementia, yet for the estimated 1.4 million individuals living with Lewy Body Dementia in the US and around 11 million globally, much remains to be done to ensure their journey is met with understanding and guidance.Our guest today on the Dancing into Brain Health Podcast, Helen Bundy Medsger, has dedicated her life to changing this reality. Transmuting decades of partnership in care to three family members living with Lewy Body Dementia, she is a passionate advocate across research, clinical, public and policy spaces, paving a way forward and building community along the way. Together, we discuss the role of lived experience experts at every stage of the dementia care journey, reflect on lessons learned from a lifetime of advocacy and envision a future where all those who receive a diagnosis of Lewy Body Dementia are met with clarity, community and hope.Learn more about Helen Medgser and her work:https://www.lbda.org/lbda_story/helen-medsger-volunteer-of-the-year/Learn more and engage with Lewy Body Dementia Association:www.lbda.orgRead more – articles co-authored by Helen:Implications and Opportunities Regarding Biological Frameworks in Overt and Prodromal Dementia with Lewy bodies, July 2025, Alzheimer’s & Dementia, The Journal of the Alzheimer’s Association https://doi.org/10.1002/alz.70470Research Priorities in Neuropalliative Care: A Consensus Statement from the International Neuropalliative Care Society, JAMA Neurology, Published online February 03, 2025. https://doi.org/10.1001/jamaneurol.2024.4932Long-term Effects of Collaborative Dementia Care on Quality of Life and Caregiver Well-being, November 2024, Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, https://doi.org/10.1002/alz.14370Public and Participant Involvement as a Pathway to Inclusive Dementia Research, November 2024, Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, https://doi.org/10.1002/alz.14350A Global Conversation with Care Partners – Commemorating the United Nations International Day of Care and Support, November 2023, https://www.gbhi.org/news-publications/global-conversation-care-partners-commemorating-united-nations-international-dayOptimizing Brain Health Across the Life Course, 2022, World Health Organization, Geneva, CH, https://www.who.int/publications/i/item/9789240054561Peer Mentorship with Lewy Body Disease: A Protocol for Co-developing and Piloting a Program for Post-diagnostic Support, June 2023, Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, https://doi.org/10.1002/alz.066048This episode of Dancing into Brain Health was edited and produced Magda Kaczmarska and Hilary Brown-Istrefi. The music for this show is the title cut from the album, Critical Path by Joe Venegoni and Carl Weingarten.